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Has anyone been diagnosed Ledderhose disease?

Dunk

Hi,
I'm fairly new here and this is my first post

I was wondering has anyone ever been diagnosed with Ledderhose disease?

Basically I was diagnosed with Dupuytren's diathesis a couple of years ago, basically the most aggressive form of the disease, which, in my case, consisted of dupuytren's contracture, knuckles pads, frozen shoulders and lastly ledderhose which affecting my feet.

My GP said I had ganglions affecting both my hands and feet!! Luckily I was referred on and was diagnosed with Dupuytren's diathesis by an Orthopaedic Consultant. He said he wouldn't surgically remove the 5 sizable Ledderhose nodules on the soles of each foot, as the resulting scar tissue would make it even harder for me to walk. He basically said there was nothing he could do for me. As a previously good walker and non driver this was a big blow to me.

I just wondered if anyone here has Ledderhose? I've yet to meet or chat with anyone who has.

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Comments

Alex_Alumni

Hello there @Dunk and welcome, thanks for reaching out with your first post. I don't have Ledderhose disease myself, but just wanted to stop by and say hello.

It sounds like a real pain to manage the symptoms, and it's sad to hear that Orthopedic consultant said they unfortunately couldn't do anything to help. Although you may be met with the same answer, have you considered seeking any second opinions? I'm no expert on this of course, but it might be worth looking into if you wanted to.

How are things going with managing symptoms at the moment?

Dunk

Hi @Alex_Scope Thank you for my first reply, I really appreciate it

I know I could have radiotherapy sessions to shrink the nodules in my feet, though this isn't available on the NHS and it is very expensive. With having aggressive Dupuytren's my nodules, whether in my hands or feet, will regrow within a couple of years anyway after surgical removal. With in in mind I may not seek surgery and just let nature take its course.

My symptoms aren't too bad, that is as long as I don't leave home! I try not to stand for too long as my feet get really sore, so I cook or wash up perched on a stool. Walking or standing a lot is very problematic, so I do a food shop once a month, that is if my Fibromyalgia permits

I do get burning hot feet as a symptom, which is bad at night, I find sleeping with my feet propped up with a pillow and uncovered really helps

Alex_Alumni

Thanks for explaining @Dunk it's really helping me understand better

I use a stool in the kitchen myself, as my cerebral palsy makes standing/cooking hard work.

Have you ever spoken to your GP or your local council about a needs assessment? You can self-refer, and it might help with providing more aids and equipment or a support worker to help with the big shop for example.

Dunk

Whatever makes kitchen jobs and cooking easier is always good with me. I'd like to say using a stool was my idea @Alex_Scope, it was my Mum

Oh thank you I hadn't thought of doing that, that is a really fab idea, I'll give that a try. I have been thinking about just having my groceries delivered, it'd be a lot easier

Alex_Alumni

Not a problem, I get my big shops delivered, and it's rare I get exactly everything I've asked for (there's often a substitution or two), but it saves an awful lot of time and effort

One thing to bear in mind is the price of delivery, my supermarket offers 'saver slots' where you pick a delivery to arrive anytime within a 4 hour period, then on the day they tell you which hour it will be. In the evening it only costs £1 instead of £7 for a more specific/earlier time slot!

Dunk

Thank you @Alex_Scope, I think grocery delivery is the way to go. I'm vegan, so substitutions are out, otherwise I ultimately end up I can't eat!

I didn't know you could have food delivered so cheaply. As I'm at home a lot, waiting for a few hourson a delivery wouldn't be a problem

L_Volunteer

Oh, those pesky substitutions when you can't eat them @Dunk! Though, you can always refuse the substitutions or send them back

Dunk

To be honest @L_Volunteer refusing substitutions is almost like a conflict type situation to me, something I try and avoid at all costs. I really am such a wimp!! :'(

Starlingbird

Dunk said:

Thank you @Alex_Scope, I think grocery delivery is the way to go. I'm vegan, so substitutions are out, otherwise I ultimately end up I can't eat!

I didn't know you could have food delivered so cheaply. As I'm at home a lot, waiting for a few hourson a delivery wouldn't be a problem

I always get my main shop delivered. I choose the saver slots too! You choose a 4 hours window and they text you on the morning of your delivery to confirm a one hour slot that is within the 4 hour slot you chose (if that makes sense?!).

One online supermarket does some evening slots for free if you spend over a certain amount. To be honest, it's often cheaper (and MUCH easier!!) to have shopping delivered than it would be to pay for the fuel to get to the supermarket!

L_Volunteer

Not a wimp at all @Dunk. Conflict can be really difficult, unfortunately

Is there anything that might make this sort of thing more manageable for you? Just so you have products that are more suitable for you

Dunk

Thank you @L_Volunteer

I've given this some thought. I think the best and easiest thing for me, is to order from a particular supermarket that has tons of vegan friendly products which I tried and liked. They're a tiny bit more expensive compared to others, though by picking the right delivery slot I would end up saving money. Totally a win win situation for me

L_Volunteer

This sounds like a great plan of action @Dunk. As I am lactose intolerant, can I please ask which supermarket you particularly prefer?

I am just curious. Hopefully, it will help you to have more foods that are more suitable for you and, as you say, a win-win